Other Ways of Knowing

Abstract

Background. Patients with advanced-stage chronic obstructive pulmonary disease (COPD) may suffer severe respiratory exacerbations and need to decide between accepting life-sustaining treatments versus foregoing these treatments (choosing comfort care only). We designed the InformedTogether decision aid to inform this decision and describe results of a pilot study to assess usability focusing on participants’ trust in the content of the decision aid, acceptability, recommendations for improvement, and emotional reactions to this emotionally laden decision. Methods. Study participants ( N = 26) comprising clinicians, patients, and surrogates viewed the decision aid, completed usability tasks, and participated in interviews and focus groups assessing comprehension, trust, perception of bias, and perceived acceptability of InformedTogether. Mixed methods were used to analyze results. Results. Almost all participants understood the gist (general meaning) of InformedTogether. However, many lower literacy participants had difficulty answering the more detailed questions related to comprehension, especially when interpreting icon arrays, and many were not aware that they had misunderstood the information. Qualitative analysis showed a range of emotional reactions to the information. Participants with low verbatim comprehension frequently referenced lived experiences when answering knowledge questions, which we termed “alternative knowledge.” Conclusions. We found a range of emotional reactions to the information and frequent use of alternative knowledge frameworks for deriving meaning from the data. These observations led to insights into the impact of lived experiences on the uptake of biomedical information presented in decision aids. Communicating prognostic information could potentially be improved by eliciting alternative knowledge as a starting point to build communication, in particular for low literacy patients. Decision aids designed to facilitate shared decision making should elicit this knowledge and help clinicians tailor information accordingly.